Thoughts on Prolia?

Posted by sheezit @sheezit, Mar 28 10:48am

Diagnosed with Osteoporosis. Drs recommend Prolia. Do not like taking medications especially oral. Last resort would be Prolia as injection. Looking for opinions on this medication. Thank you

Interested in more discussions like this? Go to the Osteoporosis & Bone Health Support Group.

sheezit,
I don't like the mechanism of action of Prolia. It is an antiresorptive. So it collects old bone and prevents the normal process of remodeling the bone. It holds osteoclasts the last stage of development. In doing so it collects they call it a resevoir of premature osteoclasts that are released on to the bone in a flood of acid when Prolia is discontinued
Osteoclasts (you may already know) are the acid producing cells that prepare the bone for the osteoblasts--the cells that lay down new bone. Our bones remodel all the time according to our activities, acutally laying down spicules in the best direction to remain flexible with the type of impact our activities generate.
In most patients Prolia protects the bone from frature. In some it causes fracture. And in all who don't replace the drug or are late for the subsequent injection, it wreaks havoc with multiple fractures. After Prolia you are recommended another drug that will tampen down the osteoclasts. These drugs continue to preserve older bone, slowing the process of remodeling.
Then there is Forteo. It's drug that builds bone, as does Tymlos. I think they are both wonderful drugs. They encourage remodeling and don't have any black boxes.
I've been on Forteo for almost a year without side effects, except that my fingernails are stronger.

REPLY

My docs won't prescribe Prolia unless absolutely necessary when patients cannot tolerate anything else. There are a lot of risks getting off, with loss of bone density, return to previous levels and higher risk of fracture. People stay on Prolia a long time and then have to go on Reclast to try to avoid rebound.
Tymlos, Forteo and Evenity are all good starting meds- and bone builders (Evenity for the first 6 months, then last 6 months are anti-resorptive).

REPLY

Good evening, @sheezit. Welcome to Connect and especially to one of the busiest support groups. Perhaps it is because, at some point in our female lives, we all face the somewhat problematic decision of how to protect the foundation for our body: our bones. On the other hand, the bones in our body are likely all different, and they age differently. And then, of course, there is a difference in our life activities and the care we have chosen for those bones. Now, add the knowledge that the medical world has uncovered, and we are left with an extensive choice.....to protect our bones.

My introduction to menopause happened to be when a news release threw our medical providers into a frightening situation that required us to change the way we were attempting to protect our aging bones. I remember stopping my prescribed medication right away and then being left with no menopausal support. That was in 1998, and I did nothing until 2018, when my new PCP recommended a bisphosphonate, Boniva.

For some reason, my jaw muscles complained violently, and I was moved to Tymlos. That was an excellent choice for me. If you have read @windyshores posts, then you know my Tymlos experience. Unfortunately, an endocrinologist insisted that I move on with Prolia. My body, especially my jaw, resisted, and I sought help from the Mayo Clinic. Today, I am in year two with alendronate. My body cannot handle large doses of medication. The once-a-week capsule on Monday morning is perfect, and there have been no side effects. I will find out the results this summer. Stay with us, and you will learn about my results.

By that time, I hope you have made the perfect decision for you and kept us informed about your progress.
We are here for you.

May you be safe, protected and free from inner and outer harm.
Chris

REPLY

Has anyone experienced elevated liver enzymes with Prolia? I have been on Prolia now for over five years. At the beginning, my enzymes were normal. My doctor did not check them for a couple of years because I don’t use alcohol. All of a sudden we checked them in September last year and they were quite elevated. I have found two studies online that mention Prolia as being suspect in these cases.

REPLY
@windyshores

My docs won't prescribe Prolia unless absolutely necessary when patients cannot tolerate anything else. There are a lot of risks getting off, with loss of bone density, return to previous levels and higher risk of fracture. People stay on Prolia a long time and then have to go on Reclast to try to avoid rebound.
Tymlos, Forteo and Evenity are all good starting meds- and bone builders (Evenity for the first 6 months, then last 6 months are anti-resorptive).

Jump to this post

Thank you so much for your thoughts. I am so overwhelmed by the severeness of the levels of my osteoporosis as told to me by my endocrinologist and pcp. I am not at all knowledgeable on these drugs and side effects they can endure. There are so many different drugs out there for this disease, but what is the right choice? Doctors push for the Prolia. Since studying this drug and reading blogs, this doesn’t quite sound to be the drug of choice. We all just want to make the right choice as to which one would benefit us the most without the side effects. Thank you for your input.

REPLY
@artscaping

Good evening, @sheezit. Welcome to Connect and especially to one of the busiest support groups. Perhaps it is because, at some point in our female lives, we all face the somewhat problematic decision of how to protect the foundation for our body: our bones. On the other hand, the bones in our body are likely all different, and they age differently. And then, of course, there is a difference in our life activities and the care we have chosen for those bones. Now, add the knowledge that the medical world has uncovered, and we are left with an extensive choice.....to protect our bones.

My introduction to menopause happened to be when a news release threw our medical providers into a frightening situation that required us to change the way we were attempting to protect our aging bones. I remember stopping my prescribed medication right away and then being left with no menopausal support. That was in 1998, and I did nothing until 2018, when my new PCP recommended a bisphosphonate, Boniva.

For some reason, my jaw muscles complained violently, and I was moved to Tymlos. That was an excellent choice for me. If you have read @windyshores posts, then you know my Tymlos experience. Unfortunately, an endocrinologist insisted that I move on with Prolia. My body, especially my jaw, resisted, and I sought help from the Mayo Clinic. Today, I am in year two with alendronate. My body cannot handle large doses of medication. The once-a-week capsule on Monday morning is perfect, and there have been no side effects. I will find out the results this summer. Stay with us, and you will learn about my results.

By that time, I hope you have made the perfect decision for you and kept us informed about your progress.
We are here for you.

May you be safe, protected and free from inner and outer harm.
Chris

Jump to this post

Thank you Chris for your feedback. I will further my research on this medication Alendronate.

REPLY
@gently

sheezit,
I don't like the mechanism of action of Prolia. It is an antiresorptive. So it collects old bone and prevents the normal process of remodeling the bone. It holds osteoclasts the last stage of development. In doing so it collects they call it a resevoir of premature osteoclasts that are released on to the bone in a flood of acid when Prolia is discontinued
Osteoclasts (you may already know) are the acid producing cells that prepare the bone for the osteoblasts--the cells that lay down new bone. Our bones remodel all the time according to our activities, acutally laying down spicules in the best direction to remain flexible with the type of impact our activities generate.
In most patients Prolia protects the bone from frature. In some it causes fracture. And in all who don't replace the drug or are late for the subsequent injection, it wreaks havoc with multiple fractures. After Prolia you are recommended another drug that will tampen down the osteoclasts. These drugs continue to preserve older bone, slowing the process of remodeling.
Then there is Forteo. It's drug that builds bone, as does Tymlos. I think they are both wonderful drugs. They encourage remodeling and don't have any black boxes.
I've been on Forteo for almost a year without side effects, except that my fingernails are stronger.

Jump to this post

gently, I'm starting Forteo on Monday. When do you take your shot, am or pm? Do you do anything else e.g., take with food, extra calcium, stay hydrated (8-10 8oz water)? I'm 115 lbs and nervous.

REPLY

@sheezit maybe you could get a copy of Keith McCormick's book "Great Bones" or watch some YouTube videos (I like Dr. Ben Leder's video "Combinations and Sequencing Approaches to Osteoporosis."

Maybe it helps to know there are two main groups of medications: bone builders and anti-resorptives (which affect turnover).

1) Bone builders: Tymlos, Forteo or the first 6 months of Evenity

2) Anti-resorptives: bisphosphonates alendronate (Fosamax), Reclast; or Prolia; or second 6 months of Evenity

The sequence of meds is important and despite insurance wanting us to start with anti-resorptives, it is much better to do bone builders first. Bone builders should be followed up with Reclast or alendronate to "lock in" gains and at some point a drug holiday may be possible.

Prolia works really well but patients can end up even in worse shape after stopping, unless Reclast is able to prevent the rebound. If I were in my 80's I would consider it and just never stop, but otherwise, I would avoid it based on my doctors' advice.

Hope that helps! A good endocrinologist is very helpful with all this but should also allow you to make choices.

REPLY

For others: I cannot handle large doses of medicines that stay in the body, like @artscaping. However I have GERD and cannot take oral alendronate. My doctor is giving me 1 mg Reclast, rather than 5mg, and would even do .5mg, and I can have that every 3 months or every 6 months. I saw another endocrinologist who said "we do that all the time." Studies show that 2.5mg is as effective as 5mg on the usual schedule. My doses will be more frequent, 2-4 times/year. I'll post on how it goes.

It helps to have doctors who will work with you flexibly.

Also, I have been told I can wait 2-3 months after Evenity to start the Reclast. With Tymlos, I was told to take it right up until the first dose of Reclast.

Sorry to be off topic here though I suppose Reclast is relevant to getting off Prolia!

REPLY
@windyshores

@sheezit maybe you could get a copy of Keith McCormick's book "Great Bones" or watch some YouTube videos (I like Dr. Ben Leder's video "Combinations and Sequencing Approaches to Osteoporosis."

Maybe it helps to know there are two main groups of medications: bone builders and anti-resorptives (which affect turnover).

1) Bone builders: Tymlos, Forteo or the first 6 months of Evenity

2) Anti-resorptives: bisphosphonates alendronate (Fosamax), Reclast; or Prolia; or second 6 months of Evenity

The sequence of meds is important and despite insurance wanting us to start with anti-resorptives, it is much better to do bone builders first. Bone builders should be followed up with Reclast or alendronate to "lock in" gains and at some point a drug holiday may be possible.

Prolia works really well but patients can end up even in worse shape after stopping, unless Reclast is able to prevent the rebound. If I were in my 80's I would consider it and just never stop, but otherwise, I would avoid it based on my doctors' advice.

Hope that helps! A good endocrinologist is very helpful with all this but should also allow you to make choices.

Jump to this post

I tolerated alendronate very well for 5 years. Now on shots 7 of Evenity. Any reason why I shouldn't go back on alendronate after evenity I stead of prolia or other thoughts.

REPLY
Please sign in or register to post a reply.